Offered thalidomide as a treatment - any input

So, just to put things back in context. I went to the Royal free in London on the 28th for my first consultation to get a date for my first embolisation.

They offered me Thalidomide, which, as an highly regulated experimental treatment. There was a study done on 18 people, which was published recently which outlines a lot of benefits, including reversal of heart failure. [Case report study of thalidomide therapy in 18 patients with severe arteriovenous malformations | Nature Cardiovascular Research] The abstract also states that further studies need to be done to ascertain the safety and efficacy of it.

I also found an article which associates high dosage of Thalidomide in the treatment of AVM with side effects, the most alarming one being peripheral neuropathy.(Study reveals the benefits of using thalidomide in patients with severe arteriovenous malformations)

The team did mention the sides effect (not the last one, mind you) and did say they are linked to the dosage so they would start me on a low dose initially. I would also need monthly monitoring and control. I haven’t made up my mind about it yet.

I have done a search on the site and found that a handful of few have been put on Thalidomide before. Any input?

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This sounds like a tough decision to make. Have you made a decision whether to start the thalidomide?

Sharon from ModSupport

I’ve read studies on this and old data. Please be careful. This was originally given to pregnant women for anxiety and certain pain.
It caused birth defects and other deformities.
I actually was thinking that this could have caused some avm issues. No data on that.
Hope this helps and don’t mean to be a Debbie downer.

I can’t see the worries about birth defects being relevant to treatment here. @Nathalie would just need to be careful not to fall pregnant while using it.

Not an issue. I am 49, I have two beautiful children and my tubes tied!

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Thank you for looking into it. I am aware of the Thalidomide scandal, it is, amongst others, one of the reasons it is heavily regulated in the clinical trial. It is actually its unpopular properties : stopping the growth of blood vessels which, in AVM cases, can be repurposed for the greater good.

I am considering it. Otherwise, as you only know too well , If embolisations don’t work / are not an option, it’s pretty much end of the road in terms of treatment for us.
I just don’t want to do more harm than good.

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I think it will depend on what they say after my first embolisation on 17th November. My heart is pumping well still and I can still walk, but I am deteriorating and my cardiologist said that I will be going into heart failure if nothing can be done. So if they tell me “sorry, can’t embolised too risky” I don’t feel I will be left with many options. At the same time, despair is not the best adviser. Hence why I speak to you guys :grinning_face_with_smiling_eyes: :wink:

I really don’t blame you for looking into it. My doctor wanted to perform a embolization but knows it is very risky and high chance of massive bleeding. I have decided not to do anymore procedures. Risk is to high and reward is almost nonexistent.
I’m losing weight because eating and drinking causes abdominal pain and really don’t have any appetite. I don’t have your tell you that everyone is different and if there is hope, stay positive. I hope nothing but the best for you keep trying.

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Oh no! :frowning_face: Is it a digestive issue caused by painkillers ? or is the AVM evolving? Have you consulted? You need strength / nutrients to fight all of this.

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It’s the avm advancing. After 8th specialist did a diagnostic procedure he found that it’s taking blood supply away from abdominal area. So when I eat or drink it feels like a cramp/pain/nauseous feeling. Nothing they can do. I still eat but less. I need to lose weight anyway. Lol

Sorry to hear that. As long as you can eat, I suppose, it is the main thing. Not fun though.

I could do with losing some weight too. Funnily enough, I went to the GP for some digestive and intestinal troubles today. He told me that where my AVM is located in my pelvis not my stomach or intestines so, it can’t be the cause for my problems. (euh…it is affecting my heart, my back and my legs so…) He is looking for potential bleeding in my bowels and again, when I asked if it could be AVM related, he told me that I do not have a very good grasp of the anatomy! :rofl: One for my quote book! :rofl:

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Well. I’ve had at least 3 doctors that I wanted to punch in the groin and ask him if that hurts. A pelvic avm can cause a lot of distress in various organs, circulatory, numbness and pain in extremities. There is not enough data to really know all that it affects.
Most doctors know anything about avm’s. So they say “it can’t be that “. I hope you can find someone who at least acknowledges your pain and symptoms. It’s hard.

I found this article recently. A doctor actually understands an avm.

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Hello. Just checking to see how you are doing.
Hope you are managing your symptoms.

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Yes I am good, thanks. Pain has not been so strong the last few months. At worst, an easy 6-7. Walking though is not improving. I am getting a bit more out of breath and have a persistent tickly cough. Had a holster 6 months ago and all was good. Just a few more heartbeats, “not enough to be of concern yet” they said. My digestive system is also completely out of whack. Yo-yo symptoms, they are. They get worse than fade away then come back. :woman_shrugging: I am going to have to add whiplash to my granny list of ailments :rofl: All in all I am good, thank you. Are you?

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